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A Young Man With Spinal Muscular Atrophy and Impending Respiratory Arrest

Winters, Janine Penfield MD; Weisleder, Pedro MD, PhD

CONTINUUM: Lifelong Learning in Neurology:
doi: 10.1212/01.CON.0000394681.97867.b3
Ethical Perspectives

From a statutory standpoint, the decision-making capacity of adolescents differs significantly from that of adults because adolescents are considered to lack the experience and judgment necessary to make legally binding decisions. Furthermore, in the case of minors, the principle of protection of life tends to outweigh the principle of autonomy. Here we present the hypothetical case of a 16-year-old boy with spinalmuscular atrophy type II who was admitted to the intensive care unit for severe respiratory distress. We focus on the tension that developed among the patient, his parents, and his physicians when the need for emergency mechanical ventilation became apparent. We review the legal and ethical premises under which adolescents are permitted to make legally binding decisions, ie, the emancipated minor and the mature minor doctrines. Finally, we discuss the concepts of protectionism and liberationism as they apply to adolescents' decision-making capacity.

Author Information

Address correspondence to Dr Pedro Weisleder, Nationwide Children's Hospital/The Ohio State University, Division of Child Neurology, 700 Children's Drive, Columbus, OH 43205,

Relationship Disclosure: Dr Winters has nothing to disclose. Dr Weisleder has served as a consultant for the Medical Review Institute of America.

Unlabeled Use of Products/Investigational Use Disclosure: Winters and Dr Weisleder have nothing to disclose.

© 2011 American Academy of Neurology